September 26, 2008 by diverdonreed
BACKSTAGE AT THE WORLD STEM CELL SUMMIT

Folks:

As anyone who has attended a Bernie Siegel stem cell extravaganza can 
verify, attendees get more than they could hope for. This year's World Stem 
Cell Summit was no exception. Every year I think, this is the ultimate, can't 
get any better than this; but it does. Bernie has put on events at the 
United Nations, Stanford, Berkeley, Harvard, and this year the American 
birthplace of embryonic stem cell research, Madison, Wisconsin.-the Summit 
deserves its own book (and in fact had one there, to which I contributed a 
story, "How to Pass a Stem Cell Law") -but I just don't have the hours it 
deserves to write a full description.

Here, then, are only a few impressions.

Dropping off my luggage at the Sheraton Hotel, (being a speaker, I got my 
room paid for, otherwise I would be Motel Six-ing it as usual), I hurried 
for the bus-
-to the Governor's mansion.  How classy is that?

On the drive over, I realized I had missed out on the Lab at the Lake, a 
hands-on-easy-to-understand tour through stem cell realities. The Summit's 
goal was something for everyone: the Lab at the Lake meant folks had a 
chance to talk with world class scientists as well as personally adjusting a 
high-power microscope to see stem cells for themselves.

So, anyway, the Governor of Wisconsin had invited us to visit in his 
official residence. We walked through a replica of the Washington White 
House, polished floors and high ceilings, all the way through to the back 
yard. There on the lawn was a big no-walls tent.

After we had chatted with other attendees and picked at the barbequed 
skewers of (I think) chicken and maybe tomatoes, Bernie introduced Governor 
James Doyle, a very down-to-earth person. (The Italian driver of the cab 
from the airport told me: "His-a heart in the right place, Jim Doyle!") This 
is also a man of integrity. Despite enormous pressure from the religious 
right to sign bills against research, Wisconsin's leader used his veto 
power, not once, but twice.

Governor Doyle welcomed us to Wisconsin, talked for a little while about why 
he liked stem cells, and then we got back on the bus.

Six o'clock next morning, I asked how to get to the conference building. 
"Easy," they said, "Just across the street, you can't miss it."  But  as I 
crossed the street, all I could see was a dense gray fog bank, like 
something out of Sherlock Holmes' London. This changed everything. And as I 
fumbled through the mist, feeling increasingly lost, it occurred to me how 
very similar our current political situation this was.

Here we were, the country ready and anxious for massive stem cell research 
funding, and we had instead a financial emergency of unprecedented 
proportions.

But I stayed on the sidewalk, solid beneath my shoes-and suddenly, a mass of 
concrete rose before me: the Alliant Energy Hall.  Quickly, the place was 
packed with nearly a thousand friends of stem cell research. People like:

Alta Charo, bioethicist, a bubbling volcano of energy, intelligence, and 
eloquence: listening to her is always a pleasure because she has so much to 
say and says it so well. Occasionally, to be sure, I get about three ideas 
behind the one she is on right now, because she talks so fast and says so 
much, but I always walk away enriched.

Waiting for the shuttle, I had a chance to chat with another bioethicist, 
David Magnus, of Stanford, who really knows his stuff on the issues of 
Intellectual Property, and more.

Wise Young's beaming presence is always welcome; the man who (in addition to 
his duties at Rutgers University, and endless advocacy for research) also 
runs a massive patient-involvement website, CareCure.org. Wise is working on 
human trials in China, spinal cord injuries, to be treated with umbilical 
cord blood stem cells, and also lithium.

One shocking moment: onstage a person (I will not use his name) made a 
statement which infuriated me. He said, we should stop using the word "cure" 
when it came to spinal cord injury, and instead stick to "treatment". The 
clear implication was there would never be a cure.  Dr. Young corrected him, 
gently but with passion, pointing out nobody suggested removing the word 
cure from the fight to cure cancer. (Hours later, Wise was still upset about 
this.)

California Institute for Regenerative Medicine President Alan Trounson gave 
an update on the CIRM's activities. Alan's great gift, I think, is not only 
his scientific acumen, which is immense (he is considered one of the 
inventors of the In Vitro Fertility procedure, which allowed literally 
millions of childless families to have a baby) but the ability he has to 
make friends for our cause. It is impossible not to like him. He radiates 
good cheer. He said something I did not understand, and hope to ask him 
about-he said, if I understood correctly, that "the NIH may not be the best 
model as a funding source".

Larry Goldstein gave a ten-minute hint on how stem cell research is 
transforming health care. (I would have liked to see him do a keynote 
address, as he has so much to say, and expresses it so well). He spoke about 
nerves as rivers of information, and that science has "worn out what we can 
do with animals", meaning, I took it, that it is time to go to human trials, 
a position with which I heartily concur. "Humans are not big mice", he said. 
He spoke about the importance of embryonic stem cells not only as the source 
of replacement cells for damaged parts of the body, but also as the 
"neighborhood" around the cells, vital if the cells are to function 
properly.

John Wagner I sat next to on the bus going somewhere, and I was impressed by 
his passion, that it was time to press for cures for patients, and for 
government to not set impossible standards which could block progress.

Jamie Thomson gave a keynote address about reprogramming, his and Shinya 
Yamanaka's new method of obtaining stem cells. I was glad to hear him 
clearly state that this new procedure in no way eliminated the need for 
embryonic stem cell research, and that both must proceed concurrently. Dr. 
Thomson is of course brilliant beyond belief, but he is a little hard to 
follow sometimes, because his voice volume varies tremendously, sometimes 
almost inaudibly soft.

He was at his best at the press conference. I took the opportunity to thank 
him, saying that when my paralyzed son rose and walked again, his first step 
was taken right here.

Amy Comstock-Rick gave a very careful and non-political look at the 
difference between the two Presidential candidates. (I wanted her to be a 
little tougher on McCain, to discuss his co-signing a bill to criminalize 
SCNT and put stem cell scientists in jail, not to mention his position on 
the "personhood" issue, which conceivably could destroy the whole field; but 
she stuck strictly to his stance on embryonic stem cells.)

Clive Svendsen talked about Wisconsin's efforts and Hideyuki Okano of Keio 
University did the same for Japan, both talks a little over my head (I was 
glad for the shortness of science talks; I start to nod off after too much 
incomprehensibility).

Breaks were welcome, not only for the necessaries, but also to (as Bernie 
puts it) "work the halls", making friends while checking out the exhibits 
and the scientists posters and the bioemedical displays.

Jeff Sheehy spoke about the difficult subject of what happens if a patient 
dies in clinical trials. This is huge-I am personally sick and tired of 
people telling me we should not go forward until we can guarantee safety-we 
cannot guarantee safety for any medical procedure, even standard treatment.

So it meant a lot when he spoke about the people who died in the HIV-AIDS 
trials- but that tragedy did not stop the research.

Peter Kiernan of the Christopher and Dana Reeve Foundation gave a rousing 
update on that great humanitarian effort. He also gave a very intelligent 
list of "top ten" issues-getting politics out of science, funding young 
scientists, pushing translational efforts, increasing the global network, 
refocusing debate onto new disease models, educating the press, embracing 
business, helping international cell banking, developing and enforcing 
rigorous standards for ourselves, and achieving a clinical breakthrough.

A breakout session discussed "Stem Cell Tourism", both bad and good!

Mark Noble (outstanding writer as well as scientist) and I had the chance to 
say hello in person, always one of the real joys of a good convention.

Bob Klein dealt with the "We can't afford stem cell research" issue, remind 
us that California passed a $6 billion program in one of the worst years 
(financially) in our history. He reminded us of Governor Schwarzenegger's 
great line that "scientists are the real action heroes of the 21st century.

Mark Burton and Danny Heumann reminded us all of the crucial state of 
Michigan, now trying to fight its way out of some of the most crippling 
anti-research laws in the country.

Sabrina Cohen spoke about paralysis, making everyone hold motionlessly still 
for sixty seconds, so we had a tiny idea of what it is like to be paralyzed. 
Sabrina is trying to develop funds for a movie about the real-life issues of 
stem cell research, and we wish her well. If anybody has any ideas on 
funding sources, drop a line.

Hans Keirstead shared with us not only his progress, but also advice for 
scientists-at his lab, three staff members have a fulltime job cooperating 
with the FDA, whose approval is needed before human trials can go forward.

Linda Powers of Toucan Industries, a venture capitalist firm specializing in 
stem cell research, gave us a look inside the money world.

Dr. Fanyi Zeng, proof that SCNT scientists can be movie star beautiful, gave 
us the scoop on China's hopes for biomedical investment, stating that by 
2020, China hoped to have 2.5% of their Gross Domestic Product invested in 
bio research.

Tommy Thompson told the story of how President Bush called him and Karl Rove 
in, and ate a peanut butter sandwich while the two debated hESC research, 
stating that this was the conversation which allowed the President to leave 
a tiny window of research open, rather than banning it altogether.

Greg Simon of Faster Cures had a political comment, saying "Wwspd-What would 
Sarah Palin do"-and suggesting we do the opposite.

Alta Charo spoke on the need for balance in human trials between safety and 
the need to advance cures for suffering millions.

I had a chance to talk about legislative fights past and present, mentioning 
that anyone wanting to help the California stem cell program should FAX THE 
GOVERNOR, and tell him to VETO S.B. 1564. His fax number is: 916-558-3160, 
and he will be deciding in the next few days, whether or not to support a 
bill which would remove California's legal preference for embryonic stem 
cell research, as well as attacking our magnificent governing board, the 
ICOC, a 29-member panel of experts, conceivably replacing them with 
bureaucrats. (Please FAX him today, if possible.)

And just to make it perfect, on the plane home I sat next to Graham Creasey, 
who is working with Gary Steinberg-and my son Roman Reed- to set up a spinal 
cord injury project at Stanford University. Whew! What a glorious couple 
days! And now, back to work!

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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